Fish oil (DHA) + Lorenzo's oil

[monkeybus]

This is very interesting, read this carefully, especially the conclusion.

I've pasted it below...

In conclusion: it was confirmed that supplementation with DHA, in addition to LO and treatment with a cholesterol lowering drug, atorvastatin, increased DHA levels in plasma and RBC of the AMN patient. These increased DHA levels may exert a neuro-protective effect by a negative feedback mechanism, leading to an increase in EPA. In turn, EPA and DHA are incorporated into inflammatory cell phospholipids, partly at the expense of AA, exerting an anti-inflammatory effect [20]. Sing and Pujol also suggested that treatment strategies should be developed for the inflammatory, metabolic and oxidative stress disease aspects of X-ALD [21]. Supplementation with DHA, is therefore strongly recommended in patients with X-ALD patients, due to the important role of DHA in brain development and myelination and the feedback mechanism which may cause a neuro-protective and anti-inflammatory effect.

I'm reconsidering LO, or Mustard oil at least.

[monkeybus]

Forgot to paste the link, here we go...

ncbi.nlm.nih.gov/pmc/articl...

[tieaknot]

I have been using DHA (fish oil) for quite a while just for mood...and I swear it helps there. I have worried that it goes against the "low fat" recommendations with ALD, so I am glad to see with this study that I am at least not doing any harm! (I know about the different "types" of fat, but still was concerned).

[Blacksheep]

Mustard oil won't invalidate insurance like LO does, at least in the U.S.

[Hidden]

What if your DHA levels are 3 x past normal limits and EPA 2 times past normal limits? My doctors think its because I cannot do the conversion BECAUSE of a X-ALD (21).

Isn't DHA and EPA part of a long chain fatty acid? Please clarify. Thank you.

[monkeybus in reply to Hidden]

I forgot all about how I posted this. Two years ago.

I honestly don't know. I've periodically Googled about DHA, but cannot find any follow-up studies.

[tieaknot in reply to Hidden]

Fish oil (DHA and EPA) are considered long chain fatty acids and ALD is an issue with Very Long chain fatty acids (just a different length chain which requires a different mechanism to “chop” it up which we can’t do). But the fish oil alone has been shown to affect the vlcfas in some way too. I can’t quite remember. I will have to find the study and post it. I know I am always wondering if I am doing good or doing harm by taking them and search for updates info periodically.

[Hidden in reply to tieaknot]

I was put on a mitochondrial diet about a month ago and eat a lot of coconut oil, also MCT oil as my doctor was sure it was a mitochondrial problem and at the same time did testing and included the VLCFA test which came out ALD possitive. For about a week my leg naturopathy and kidney pain, exhaustion have been worse. I am thinking it's from the coconut oil. I stopped the fish oil when my tets came back so hih on the EPA and DHA. I don't go back to my doc until next week.

[tieaknot in reply to Hidden]

Will be very interesting to find out more. My old doc seemed to think it was ok because it wasn’t a vlcfa. I tend to feel better when I take them. But only certain ones. It is a game of trial and error for each of us, isn’t it?

I just wish we could wear a patch that has all of our “stats” (blood levels of anything, nutrition level, general health) like in a video game at the push of a button in our arm or something. lol

[Hidden in reply to tieaknot]

Isnt that the truth. I have had problems since birth but only found out dx 2 days ago. I also have Ehlos Danlos syndrome so my docs have always thought it was that but things were not adding up. I have seen head of neurology Stanford but they said they thought my problems had something to do with my blood no referral to whom I should see and also they just said that if I had another stroke they would send me to the stroke center but no answes on why a female unde 50 should have a stroke in the first place. I have perfect cholestero. Lol It was my osteopath that's been the most hall and specializes in neuromuscular issues, EDS and traumatic brain so she is an expert in mitochondrial diet. I will update you as soon as I get any information from her.I believe I will be sent to a team of doctors at UCSF.

[tieaknot in reply to Hidden]

Wow! We need to chat over coffee sometime. I had aorta surgery a few years back by a surgeon who specializes in ED vascular issues. (Mine was an unrelated rare congenital anomaly) but I also have had other different (apparently unrelated) issues since birth, some similar to what you’d see in ED. I was adopted so I don’t know family history. The ALD issues technically aren’t supposed to show up until adulthood in women so I am now wondering if maybe there is a different “type” of genetic mutation or syndrome that maybe you and I might have (and maybe others out there?) that involve other conditions.

(Or maybe we are long lost sisters! Lol)

[nikolahn]

Нo help for damaged legs peripheral nerves.